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Tuesday, January 8, 2013

Happy Anniversary (one year with AAC)

A year ago today I downloaded Speak for Yourself onto Maya’s
iPad.

And everything changed.

After over a year of searching for a communication solution,
meetings with representatives from Dynavox and Prentke Romich, a failed attempt
at using Proloquo2Go, a lot of PECs work, the creation and utilization of the
Word Book, and a miserable assistive tech evaluation from the DOE (thanks for nothing guys, seriously) . .
. I had nearly given up.We were fresh
off of a failed trial with a Dynavox device and I had begun emailing the creators
of several big name apps, asking a ton of questions and re-evaluating whether
maybe one of them would fit.I was
feeling kind of low . . . here I was, starting the search again.A Facebook message from an SLP friend pointed
me towards SFY, which was brand new to the market.As I’ve gotten many such tips, I didn’t pay
it much mind and only had one eye on the computer as I watched the SFY demo
video . . . but it didn’t take long for it to have my full attention.I watched it again.Then I called Dave over to the computer and
said “Ok, you have to see this. I think this is it.”

And it was.

A year ago today, I downloaded SFY and played with it for a
few minutes before Maya demanded to see it---and I told Dave to grab the videocamera so we could record what her initial reaction was. It was good. She liked
it as much as we did. To be fair, she liked any communication system that we
introduced (well, besides the Dynavox device---too many pop-ups and moving
words---she gave up on that one quickly). She liked Proloquo2Go when it let her
talk (but I had to customize it to not hold much vocabulary---too many folders
to keep track of), she liked the Word Book when it helped her get more detailed
thoughts out (but it had no voice). Speak for Yourself had both.It had the potential to have a massive
vocabulary (which she understood---she would tap the Babble button, all of the
words would light up, and she would squeak with excitement) and it had a literal voice.She could tap “milk” and hear a loud, clear
voice say “milk” . . . for a kid who only gets to hear her voice in her head,
hearing her thoughts spoken aloud must be pretty exciting.At least that’s my guess, based on the way
that her little face would light up (and sometimes still does).

And so, she had a voice.

Well, mostly.

It’s not that simple, of course---here’s the app, it talks for you, good luck learning the vocabulary and
grammar.We’ve done a year’s worth
of work, and grammar (as in subject-verb sentences, multi-word combinations,
etc) is just emerging. But the power of words---even just single words---is
amazing.Truly.

Imagine if you could say nothing. (That was Maya 2ish years ago)

Now, imagine if you could say things with a communication
board/book, but were limited to the words on hand. So, you could say “chicken
nugget” if you were hungry, because it was in the book.But if you saw a picture of a shark on tv and
you wanted to talk about the shark, you couldn’t, because “shark” wasn’t in the
book. (That was Maya a year and a day
ago.)

Now, imagine if you could say anything, just using
single words instead of sentences. (That’s Maya now. Well, mostly. She doesn’t
have every word, but she learns where new words are every day.)

Maya can tell me what she wants to do (paint, read, dance) or what she wants to play with (book, bus, princess) or where she wants
to go (school, dog park, diner).She can randomly say something that seems out
of place (the name of a school friend,
ferris wheel, thunderstorm) and suddenly I know what’s on her mind, at
least in a general way.She can
translate her own speech---when she’s making a sound pointedly at me and I can say
“I don’t understand, can you tell me with your talker?” and most of the time,
she can.She can make jokes . . . and
she’s quite the clown.After
accidentally hitting “fuzzy navel” at breakfast one morning she saw that it
cracked me up, and it’s been a favorite button ever since.

Without SFY, I wouldn’t know Maya.“AAC
let me know who my child really is” is a common refrain among parents (and
siblings, and grandparents) of AAC users, and for good reason.I had no idea that she understood concepts
(like weather) or wanted to make jokes (like fuzzy navel) or was starting to
spell (M-A-Y-A).And there would be
absolutely no way for me to know these things without an app.

No, scratch that.Not
“without an app”. . . without Speak for Yourself. AAC is not a one-size-fits-all industry, and we tried several
not-quite-perfect things before finding SFY.It has been our perfect fit.

When the news of the lawsuit broke, I panicked.When the app was removed from the iTunes
store, I re-panicked.When the app was
removed from the android marketplace, I panicked again. I had no idea what we would do if this app, which had become Maya's voice, disappeared. I loved SFY, and as I got to know the
creators of the app I really liked them, too . . . but I couldn’t help but worry. When
faced with a lawsuit not only designed to dismantle their business, but also aimed
at them personally, it seemed that the most logical solution would be to quietly
concede.Yet Heidi & Renee (the
co-creators of SFY) shouldered the stress and expense and frequently made it
clear that this wasn’t about money, it was about protecting the voice of the
app’s current and future users.They
fought the good fight for the right reasons . . . and a year later, the app is
back in the iTunes store and the android store and we don’t have to worry about
losing it, ever.I normally don’t get
personal while discussing Speak for Yourself, but I would be remiss in not
mentioning them this time. If SFY had been created by different people than
this anniversary might not have existed, because the app very well could have
disappeared back in March.Heidi and Renee, I am forever grateful not
only for the intelligence, creativity, knowledge, and planning that went into
creating such a well-designed communication app . . . but also for the strength
and conviction that it took to fight for it, and for us.Thank you both.

Happy anniversary, Maya.A year and a day ago, we knew that you had so much to say.Today you can speak for yourself, in a simple
but increasingly clear and clever way.Here’s to an
ever-more-wordy future.I can’t wait
to hear all of the (ridiculous, sweet, sassy, funny, clever, naughty, silly, sneaky) things that you have to say.

Happy Anniversary! I think what stood out to me most was you saying you had some evaluation and Maya scored low on receptive language (I think?) and then every post since about the talker shows just how much she understands, and how smart she is! Way to go, Maya! Way to go, Mom for finding the right thing for your daughter and working so hard on her behalf. You are an inspiration. Truly!

a wonderful post about a wonderful anniversary to celebrate!! we are beyond thrilled at how far maya has come and how much work and dedication you put in to making it happen. imagine if that evaluation had made you re-think maya's capabilities and you hadn't persevered and pushed for so much more---what maya needed and deserved!!! and god bless heidi and renee and wish them only the best!

Happy Anniversary to you all! It has been a priveledge to have learned from you and Maya over the past year. Thank you for your honesty and insight. I think your post addresses most of the Myths of AAC (http://depts.washington.edu/isei/iyc/romski_18_3.pdf) in a way that hopefully will get more speech pathologists and early interventionists understanding the importance of using AAC with a vast vocabulary with young children. I'm thrilled for you all. And I love knowing that Fuzzy Navel was programmed in by Heidi and Renee at some point, maybe on a hot summer's night?! I lift my Fuzzy Navel to you and say Cheers to a wonderful Mama and a gorgeous, chatty, funny, and blessed Maya. From Mary-Louise

Hi Maya and Family! I just read about your AAC / SFY odyssey on Jonathan Zittrain's blog, and have now been pouring over the various posts here.

So it seems the good news for you Maya is that the settlement means SFY is here to stay / yours to keep.

I'm not a lawyer and I don't mean to drag you any further into that world than you've already had to be, but the aggressive intellectual property world we live in is such a frustrating place. Patent trolls are essentially running white collar protection rackets where they extort fees from inventors because they've previously patented every imaginable thing on earth. (although in your case I guess fees were the second choice after they weren't able to destroy the innovation)

Suffice to say this landscape upsets me, but it's wonderful at least to know, that things have worked out for you Maya. And while the sealed terms of the settlement don't say much, perhaps the filings by you and the others helped force the settlement.

Anyway, I'm inspired by your life, your efforts, your family, and all the wonderful content on this blog.